The impact of idiopathic hypersomnia on the social lives of young adults.

Objectives: People with idiopathic hypersomnia report significant impairment in their lives due to idiopathic hypersomnia symptoms, and this likely includes an impact on social relationship health. This study investigated the effects of idiopathic hypersomnia on social relationships (friends, romantic, and sexual) during the key developmental period of young adulthood.

Methods: Young adults (N = 106; 18-39years) with idiopathic hypersomnia were recruited through national hypersomnia patient organizations. Participants completed an online survey assessing the impact of symptoms on overall social functioning, as well as assessing friendships, romantic relationships, and sexual relationships.

Results: Nearly all participants (98%) reported that idiopathic hypersomnia made their social life more challenging. Over half (56%) felt they had too few close friends. While 69% were currently in a romantic relationship, the majority (92%) reported that idiopathic hypersomnia made it more challenging to enter a romantic relationship, with 89% stating that it impacted their sex life. Symptoms with the greatest perceived impact on social relationships were excessive sleepiness, brain fog, and long sleep. Most participants expressed that they would like their clinicians to ask about their social lives.

Conclusions: Idiopathic hypersomnia substantially impacts the social lives of young adults, including friendships, romantic partnerships, and sex lives. Despite the importance of social relationships, clinicians seldom address this topic during clinic visits. When considering whole person health for people with idiopathic hypersomnia, clinical care would benefit from more attention to social health.